This year, I’m embracing crip time as part of life with SMA

Daily tasks may take me longer, but I'll get to where I need to go

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by Kevin Schaefer |

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When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro station to get to and from the city’s Capitol building. I hadn’t taken a train or subway in years, and my blatant lack of direction as I fumbled through the murky interior of the building made it clear that I was a tourist.

Still, I relished the atmosphere. Because my normal work commute involves going from my bedroom to a home office a few feet away, this excursion was a welcome change of pace.

The only thing that separated my SMA peers and me from any nondisabled passenger was the additional time it took for us to get in and out of the station. Rather than taking one or two elevators to get to the train platform level, I had to navigate several that were spread across different floors and various entrances. Entering and exiting the station felt like being in an early 2000s video game, but without power upgrades or coins to collect along the way.

Yet many other factors make my commute take longer than it does for others. My arm strength, wheelchair function, body temperature, and overall stamina all affect how long it will take me to get from one place to another or to complete a task. Disabled people refer to this concept as “crip time,” and it affects all aspects of our daily lives.

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Letting go of guilt

Crip time is simple. The Stimpunks Foundation defines it as “a flexible standard for punctuality, as an accommodation for a person with a disability.” We need additional time to get ready in the morning, eat, commute, enter buildings, and go to the bathroom. Some people might label our needs as inconveniences for them, but we must reject this form of ableism.

I’ve struggled on plenty of occasions with feeling like my crip time is a burden. During a family trip to Disneyland a couple years ago, my hands froze on the first morning we were there. As we left breakfast, I couldn’t move my right hand forward to drive my chair. I knew my family was supportive, but I still felt a surge of embarrassment and guilt as I added extra waiting time for us. We were all eager to get on rides and see the characters, but I needed to warm up first and rest my arm.

Another time, I had to pull to the side of a pop culture convention floor to rest and charge my chair. Often at these events, I have a desire to take advantage of every moment and do as much as possible, but I’ve learned that it’s OK to slow down and conserve my energy.

Today, I’m well aware of how crip time is a central component of my life. It takes me extra time to do almost anything, from crossing the street to typing on my computer with the onscreen keyboard. Each task I do throughout the day requires significant amounts of energy, and I’m making a pact with myself to not feel guilty for taking breaks.

Crip time is just another part of living with SMA, and it’s nothing to be ashamed of. This year, I’m embracing it, no matter what society may say. I may need additional time and extra elevators, but I’ll get to where I need to go.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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